Yay! Ben is okay!

 

Great news!  The results of MRI and the MRA scans on grandson Ben’s brain were excellent!  There’s no problem with the original fistula repair, and no new fistula has formed. Dr. Berenstein in New York reviewed over 50,000 images and found no problem. Yay!

Thank you, thank you to everyone who has kept Ben and his parents in your thoughts and prayers.

Originally, when Ben was 3 years old, it was a problem with his eye that led his parents to seek out medical care.  Ben was diagnosed with a dural AV fistula (a vascular malformation in the brain) which was causing pressure behind the eye.  His little life was in danger, and he underwent a visit to the children’s hospital in Chattanooga, TN, stays in two children’s hospitals in Atlanta, GA, and three surgeries in New York City by a world-renowned physician before the problem was corrected.  We are so, so grateful to Dr. Berenstein for saving Ben’s life and for continuing to follow up on Ben’s condition.

Recently, his parents noticed a difference in that same eye, and this is what prompted the brain scans.  Now that Dr. Berenstein has given Ben the “all clear” as far as the fistula is concerned, the next step will be an appointment with an ophthalmologist to have Ben’s eyes checked.

Again, thank you to all who have Ben in your thoughts and prayers.  I’ll keep you posted…

#BenStrong       #Soli Deo Gloria

V.I.P. treatment at Tyndall Air Base while waiting on test results

There still is no word on results of the MRI and the MRA on Ben’s brain.  Dr. Berenstein’s office in New York received the images, but Dr. B. was out of town this week.  When he returns he must review over 50,000 images, so we do not expect to hear anything now until next week. In the meantime, Ben has been at the beach with extended family and had an exciting tour of Tyndall Air Force Base which is nearby.

Ben with his sweet cousin, P.

Tyndall Air Force Base is the home of the largest F-22 fighter wing in the Air Force.  The fighter wing trains F-22 Raptor pilots and other personnel for worldwide assignments to combat Air Force units.  It also organizes, equips, and trains a Raptor squadron for immediate worldwide rapid deployment.  Ben’s dad arranged for a tour yesterday, and Ben was able to visit the air traffic control tower (where he actually cleared a pilot for takeoff), meet with F-22 Raptor pilots, attend a service dog demonstration, and eat lunch on the base.

At the air traffic control tower…

 

Clearing a pilot for takeoff…

 

After visiting the control tower, Ben met two pilots from the 95th Fighter Squadron.  The 95th was first activated in 1942 and supported the Allied invasions of North Africa and Italy during World War II.  After the war the squadron was assigned to the Alaskan Air Command and later to the Washington, D.C. area.  In 1974, they were reassigned to Tyndall Air Force Base.  Although they were inactivated in 2010 due to budget constraints, they were reactivated in 2013 and are the new operational F-22 squadron at Tyndall.

The 95th Fighter Squadron is known as the “Boneheads,” and their motto is “Death With Finesse.”

 

Ben posed with “Mr. Bones” …

 

and was given a 95th Fighter Squadron shirt as a souvenir…

 

Two pilots from the 95th Fighter Squadron showed Ben around an F-22 fighter plane and let him try on some of their gear…

 

And of course they posed for the obligatory photos…

 

Lunch on the base was highlighted by a number of souvenirs for our little guy, including this photo signed by some of the F-22 pilots…

 

To everyone at Tyndall Air Base who made this day so special for Ben, his mom would like to say, “What an amazing day for an amazing little boy! A big thank you to Tyndall AFB for allowing us this opportunity and treating us to something so special!”

Please continue to keep Ben and his parents in your thoughts and prayers as we all await the results of his brain scans.

#BenStrong       #Soli Deo Gloria

Waiting on Ben’s Results

The results of  grandson Ben’s brain scans, which were done here in Georgia on Friday, were “over-nighted” by Federal Express to New York where Dr. Berenstein will view them.   Over 57,000 images were taken during the MRI and the MRA. Now all we can do is wait, but we hope to hear results this week.

Before his brain scans Ben was in good spirits and played video games while waiting at the Children’s Healthcare of Atlanta facility…

 

Over the past 3 years Ben has had a number of brain scans, but this was the first time that he was not sedated. Here’s what his dad said…

Today was the 1st time Ben has ever attempted to have an MRI/MRA w/o anesthesia. The nurses & lab techs allowed me to pick him up & set him in the “tube”. After having multiple shields & guards placed over him, they told Ben that he “could not move for the duration of the scan”. Over the next hour, he was so uncomfortable that he started to cry but HE NEVER MOVED!!! After everything he’s already overcome, I shouldn’t be surprised by anything he does but this blew me away.

Ben’s dad is the youth minister at the church they attend and was scheduled to take the high school youth group to the Six Flags Over Georgia amusement park the day of Ben’s scans.  He had to ask other people from the church to take the youth to the park and planned to join them after the scans. However, because Ben didn’t have to recover from sedation he was able to go, too, and was very excited…

And the youth group members welcomed Ben with open arms…

Most teens could care less about little kids. NOT MY YOUTH GROUP!!! All 23 ppl who went to 6 Flags today stopped what they were doing & gave Ben a huge hug as soon as they saw him. After lunch, he didn’t want to hang with me. Several members of the youth group offered to stop what they were doing & quit riding the “Big Boy” rides and instead, take Ben to the “Kiddie Rides”. I never asked them to do it….they wanted to!!!

Ben and his parents have now joined extended family on his dad’s side for a beach vacation. However, if after viewing the images sent to him, Dr. Berenstein finds an “emergent situation,”  they may have to leave the beach and travel to New York.  The waiting is the part that is so scary.  As his dad says, “Your prayers have gotten us through the 1st stage of this test but there’s a much bigger hurdle in front of us now. Please DO NOT STOP PRAYING!!!”

Thanks to everyone who is keeping Ben and his family in your thoughts and prayers.

#BenStrong   #Soli Deo Gloria

 

Brave Ben needs your thoughts and prayers

A year ago grandson Ben was declared to be cured of a dural arteriovenous fistula in his brain

…but some problems have recently arisen, and his dad had to contact Dr. Berenstein in New York, the doctor who performed the procedures that saved Ben’s life.  Dr. B. wants Ben to have an MRI scan (Magnetic resonance imaging) and an MRA scan (Magnetic resonance angiogram) as soon as possible.  Those tests are scheduled for Friday.

It goes without saying that we are frightened, especially since Ben was doing so well and had been considered to be completely cured.  Our family is asking for prayers for Ben and for healing thoughts to be sent his way.  If the results of the scans are serious, he will have to make an immediate trip from his home in Georgia (or maybe even from Florida where he will be vacationing next week) to New York City.

My long-time blog followers know Ben’s story.  For my new followers and casual readers, I will give some background: 

Grandson Ben’s journey began in 2014 when, at the age of 3, he was rushed first to Erlanger Children’s Hospital in Chattanooga, TN and then to Scottish Rite (Children’s Healthcare of Atlanta) in Atlanta, GA where he was diagnosed with dural AV fistula, a vascular malformation in his brain.   Although doctors at Scottish Rite diagnosed the condition, they honestly admitted they could not treat it.  At Emory University Hospital in Atlanta, doctors told the family that without treatment Ben would die and that they could do neurosurgery, but the odds were not good.  We were told that Ben had a 50% chance of suffering a stroke during surgery or that he could die on the table.

Ben’s dad contacted Dr. Berenstein, the New York physician who pioneered the procedure that would save Ben’s life. Dr. B. said Ben would not die, and the chance of his having a stroke was only 5%, not 50%.  Just after Ben’s 4th birthday, Dr. B. performed two endovascular surgeries, the first to place tiny platinum coils in the fistula, and the second to further close it off with medical grade “super glue.”

The annual check up a year later showed that the original fistula had reopened, and a new fistula had formed.  Dr. B. again performed surgery in what was described as a life-threatening situation.

Last year Ben, then 6 years old, underwent a cerebral angiogram as part of the yearly check up.  While he was in recovery, his parents received the good news. The original fistula was completely gone.  The blood flow had been re-routed.  The new fistula that was developing the previous year also was gone as a result of decreased pressure in the brain.

But now we don’t know what to expect.

Please remember Ben on Friday and send your thoughts and prayers his way.

He has had a good year since being pronounced cured and recently completed first grade in school and celebrated his 7th birthday.  He is a bright little guy who enjoys school, plays sports, loves music, and has a strong personal religious faith.

A few photos taken by Ben’s mom as he finished up the school year…

With his silly glasses and the little girl who has been his “girlfriend” since pre-K

 

Last day of first grade

 

 

And a few birthday photos…

The birthday party featured a water slide and other outdoor water fun

 

The party had a Blue Angels theme. The Blue Angels are the flight demonstration squadron of the U.S. Navy.

 

Ben’s most treasured gift was a flight suit like those worn by the Blue Angels aviators. Later, he was very excited to receive a surprise package from a former Blue Angel !

 

This precious child means the world to so many people. We appreciate your healing thoughts and prayers, and we pray that the symptoms Ben has been experiencing will prove to be transient and not indicative of a recurring problem.

(Linking to the DP Challenge today.  We need all the views and all the prayers we can get.)

#BenStrong   #Soli Deo Gloria